In the beginning, Matt and Lesley Skahan didn’t want to talk about their newborn son, Mason.
“We knew something was wrong, that Mason was delayed,” Lesley said. “But it was hard to admit.”
Despite the reassurances of health professionals that Mason would “catch up,” the Skahans were not satisfied.
“‘Tummy time’ was a real challenge,” Lesley said of putting her infant son on his stomach. Instead of pushing up with his arms, Mason laid and cried, seemingly in pain.
At 6 months he was still unable to sit up. Toys were of no interest.
At 9 months, the Skahans sought the advice of Vickie Snavely, a physical therapist with ANW Cooperative, who immediately recommended Mason be seen by a neurologist.
But even then, the results weren’t conclusive. Additional visits to a developmental pediatrician, an orthopedist, an opthamologist and a urologist were equally disappointing.
It wasn’t until September when the Skahans visited Dr. Ronald Cohn, a geneticist at Johns Hopkins Hospital in Baltimore, that Mason was given a diagnosis of hypotonia, deficient muscle tone. The â¨diagnosis allows Matt and Lesley to rest easier knowing that “with time” Mason should achieve milestones such as walking, feeding himself, and other physical functions.
The Baltimore doctor reassured the Skahans that “he’ll get to the bottom,” of Mason’s handicaps, Lesley said.
At present, Mason has the physical and mental abilities of an 8-month-old.
“It’s a global condition,” Lesley said, meaning hypotonia affects both the mental and physical development of a child. At 24 months, Mason is just beginning to crawl, “Mason-style,” said Lesley. He doesn’t talk, sucks on a pacifier, requires a middle-of-the-night feeding and prefers the simplest of books or melodies.
A gentle child, Mason is the epitome of happiness.
“He’s a 30-pound baby,” Lesley said.
THERE’S NO DENYING that having a special needs child is hard, Lesley said. On marriages, family life and friendships.
Lesley, 34, counts herself lucky in all three categories. She and Matt met while students at Iola Middle School eventually marrying in 1998. They share many of the responsibilities of caring for Mason, including his middle-of-the-night feedings.
“You have to have a strong marriage to survive this,” Lesley said. “It’s definitely been a humbling experience. We used to think little things were so important.”
Matt is an optometrist with Iola Vision Source.
The Skahans have two other sons, Jake, 7, and Gage, 5.
“They accept Mason completely, but sometimes their friends question why is he this way,” Lesley said.
Of course Mason is their biggest fan, though sometimes they can become too rambunctious.
“Mason has sensory issues. Loud voices or too many people easily overwhelm him,” Lesley said. At Farm-City Days, “he completely shut down from the over-stimulation.”
He also has the unbounding energy of a 2-year-old that is best contained when he’s placed in an exersaucer in which he jumps incessantly.
“He’s gotten so strong he can tip it over,” Lesley said, which requires her to be with him his every waking moment.
Matt and Lesley usually rely on family members to stay with Mason.
“It’s hard to get a baby-sitter. He’s comfortable with only a small circle of people,” she said. Lesley is the daughter of Iolans John and Sue Wilson. Matt is the son of Nancy and Dennis Skahan, also of Iola.
As a family, the Skahans try to live a “normal” life, including vacations.
“If you plan, it’s do-able,” Lesley said. “Mason’s condition doesn’t stop us from our day-to-day lives. You can’t let it.”
Through Mason’s illness Lesley has discovered “a whole new life.”
“I used to receive mailers from Special Olympics and toss them. Now I pay attention.”
She’s also become aware of services through Greenbush, the Southeast Kansas Education Service Center which provides the Birth to Three program where Lu Ann White, a family service coordinator, works to see Mason has access to programs and services to help his development.
“It’s an awesome service,” Lesley said. In their family room is a high-tech-looking “stander” and “walker” that help teach Mason to stand erect and strengthen the muscles in his upper torso. “These are expensive items,” Lesley said. “Our only obligation is to return them when we’re through using them.”
The “stander” alone costs an estimated $2,500, Lesley said.
Though Mason has strong legs, his upper torso is under-developed. He has difficulty using his hands and arms.
“The smallest object he can handle is a small stuffed toy, but even then it’s for only a few seconds,” Lesley said.
Hailey Pringle, a speech language pathologist with the Birth to Three program, worked with Mason to help him develop fine motor skills necessary for chewing.
The Birth to Three program is funded through Medicaid.
There are other devices in the Skahan home provided by SKIL, the Southeast Kansas Independent Living agency, also paid for through Medicaid.
Lesley also points to the help and friendships of Stephanie Larson, a speech therapist, and Snavely, who now work twice a month with Mason.
“At first, Vickie worked with Mason twice a week,” Lesley said of Snavely.
“They’re our extended family,” she said.
After an evaluation this coming summer, Mason is expected to attend ANW Cooperative on a regular basis to receive physical, speech and occupational therapy.
“We’ll see how much he’s up to,” Lesley said of what can be a rigorous schedule.
FOR FRIENDS, Lesley’s have branched out because of Mason.
In the last year she has started a support group of other mothers of children with special needs.
“Nobody knows what we’re going through. You feel so alone,” she said. “So to be with someone who ‘gets it,’ is such a relief.”
The four women are “like sisters” now, Lesley said. “We’re not an organization, though we do try to meet once a month. We’re all absolutely committed to our kids.”
Lesley also frequents the online chat group Hypotonia Hope, where parents of other children with the disability share their thoughts and concerns, as well as helpful advice.
A devout Catholic, Lesley said she believes Mason is “God’s gift” to her.
“I’m a better person because of him.”
